To know for sure

[Clearwater AL]

If your Neuro tells you that you do not have ALS that is somewhat of a relief, but so many other MNDs can be very disabling. Tell your Neuro that you need to apply for assistance, help, benefits or whatever and you need your diagnostic code. If your Neuro says, "He/she thinks, he/she suspects, he/she feels or he/she believes" that it is PLS put them to the test and ask for your diagnostic code. If it's not 335.24 (in this country)... it's not PLS. Yet. I think there is an MND code for undetermined. Then ask why.

 

[gooseberry]

Good points Al since everything rides on the icd9 codes. Well now they are icd10 .

 

[Clearwater AL]

Thanks Steph, as you may know, so many Neuros will tell a patient that are well into their journey that they (the Neuro) are "leaning to" - "thinking" - "believing" - "have suspicion" or whatever that it's PLS. What they don't do too often is fully explain why they can not definitely diagnose it as PLS even though they may talk about it or explain how PLS affects one during a Neuro visit. So, that person walks out believing they have PLS anyway. I believe folks who have had numerous Neuro appointments, lingering in limbo, should ask their Neuro point blank, "How long do you feel it will take for you to give me a diagnosis. What do you need to see or what evidence is lacking?" It seems to be a question patients are reluctant to ask.

It's their (patients) money or their insurance company's money... go for it!

 

[Nuts]

Hi Al, it's nice to see you posting!
Becky

 

[Clearwater AL]

Thanks Becky. I may drift away again (making some happy). I have to live with this but not live in it. Maybe I've been too frank and honest for some... being I have been a member for a few years going way back to Elaine (Ottawa Girl) so this certainly does not imply to any recent members. Anywhoooo... thank you.

 

[gooseberry]

I think neuros are reluctant, at least general neuros, to make any mnd diagnosis. The problem is, without a definitive test, they lack confidence since it isnt frequently seen....at least in my opinion. Steve's first neuro consulted with a pulmo she knew in another country because he wasnt the typical onset(He had respiratory) The pulmo reviewed Steve's records and said it looked like mnd without examining Steve. After that, and with local pulmo and cardio agreeing, he got the diagnosis.

I did ask for explanation of every test. Why it was run and what it ruled out. Doctors are not used to being questioned!

 

[Atsugi]

"Doctors are not used to being questioned!"

Boy, oh boy! You got that right! I understand two reasons why doctors don't stand up tall and explain their decisions.
First, lawyers will latch on to every word.
Second, we patients don't really have the education to understand the doctor's thinking, anyway.

But we should always ask lots of questions and pin them down as much as possible.

 

[Clearwater AL]

Hey Mike... I agree. But.... many conservatively governed states have completely gutted mal-practice possibilities. I have a friend who severely cut her leg with a roto-tiller that was tilling compost (manure). The wound was 6" inches long and 2" deep. The ER completely botched the situation. A physicians assistant did the repair (she was never seen by a doctor). The PA botched the suture job and did not completely flush out the wound. Five days later she was immediately admitted into the hospital again and the next day went into emergency surgery with a wound infection so bad it all had to be cut out. She had two infections, one from the manure and one commonly picked up in ERs. She was never given a prescription for antibiotics when discharged from the ER. (And... she even asked if she should be given one but the PA said she'd be fine.) This was here in North Carolina.

Not one law firm of three she called would take it. I repeat... not one.

Why?

Because she didn't lose her foot or leg and eventually recovered but with a scar far worse than the original laceration.

Every law firm told her that the state legislature had changed the laws so that mal-practice law suits (such as her case) are now nearly impossible to take on or win.

So, in some states (and more to come) doctors can relax their concerns pertaining to lawyers. PAs too.

PS. So, just a misdiagnosis (here in NC) wouldn't stand a chance for litigation.